Grief and Bereavement

Welcome to the October edition of Ask Dr. Emily! We often receive questions that we want to share with all our readers. To help with this, Dr. Emily Neuhaus, a clinical psychologist at Seattle Children’s Autism Center, will share insights in a question and answer format.

Hello Dr. Emily, my friend has a child with autism who experienced the loss of a family member…are there any resources or info you have to help her cope? They were very close.

I’m so sorry to hear about your friend’s loss. This is a hard transition for the whole family, and coping will take some time. In these early weeks, a big part of supporting children through a loss is helping them understand what’s happened in a way that’s appropriate for their age and personality. Children are likely to feel confused about their family member’s absence and why others around them are sad, especially if they aren’t given any information.

How to share information with a child or teenager will be different for every family – each family will have their own beliefs and understandings about what it means when someone dies. Whether a child has autism or not, I’d encourage parents to share the information that they’re comfortable sharing, at a level appropriate for their child’s age and development. One approach for this is to use a social story or other visual method to help them understand how things might be different from them. Below, we’ll include links to websites with guidance on finding or making a social story related to death or loss. For some children, it may be best to have a very concrete and straightforward conversation about the family’s loss, using phrases like “their body stopped working” or “we won’t see them anymore, but we can still think about them and talk about them”. Other children or teens may be open to having more abstract discussions, and that might feel appropriate for that family. For any of these approaches, though, it can be helpful for caregivers to plan ahead what information they want the child to know and what will not be shared. As adults, we know more detail about the situation and have more context for understanding this kind of loss, but we don’t necessarily need/want to share all of that with children.

As part of this process, be ready for questions that may come up. Some kids won’t ask about the loss at all, and that can be okay. But other kids might ask a lot of questions, and since they don’t grasp the emotional weight of the situation for the adults around them, they may ask questions that feel insensitive or bring up the topic at times that feel inappropriate. This can be really surprising, so it may help to anticipate that happening ahead of time.

Dr. Molly Cevasco, a clinical psychologist here at the Autism Center who often works with families around issues like loss and grief, shared some really helpful ideas for processing grief and loss in ways that are respectful of a child’s developmental level, as well as a family’s cultural values.

“It’s so important to take time to think about how your family thinks about death. It can be an incredibly valuable piece of the conversation. As an example, take time to think about whether your family believes in heaven, an afterlife, or perhaps the idea of karma. Thinking about these topics can help you to not only frame your conversation with your child, but also to help prepare them for things they might hear from other family members. For children with autism, these abstract concepts can be difficult to fully grasp, and may affect the way your child understands and processes death and loss. One book I love to share with children and families is When Someone Very Special Dies by Marge Heegaard. It offers very concrete explanations about death in a sensitive way and includes good visuals, too. One concept about grief that I think is very important is Silence is not golden: While it may feel instinctive to avoid talking about loss with a child, they need to be able to hear from you and learn about how to cope with grief together.

As your family and your child processes a loss, it is important to remember that temporary signs of grief are very normal. Your child may not feel comfortable attending a funeral, and should not be forced to. Your ability to accept their grieving process makes it more likely that they will feel comfortable sharing their worries and working through them with you. While most children will grieve and slowly return to their typical functioning, some children may experience extended grieving patterns that may benefit from therapy. Some signs to look for include: withdrawing from friends and other interests for an extended period of time, difficulty sleeping that is different from any sleep difficulties that existed before the loss, significant changes in eating patterns (eating much more or less than usual), or an increase in irritability. There is a great website that I often refer parents to that discusses how grief may look in children of different ages. As you review it, keep in mind that your child’s developmental level impacts how they grieve: Kidshealth.org – bereavement reactions.

Below are some additional resources for supporting others during grief and loss. Some of them are more specific to ASD while others are more general. Best wishes to your friend and her family, and thank you for your compassion in supporting them.

Bereavement and Grief Resources for individuals with autism

Websites

• Indiana University
• The ARC Autism Now
• Individuals on the Autism Spectrum Coping with Grief
• Autism Now – Blog on grief and bereavement 
• Autism Speaks – Grief and Bereavement Resources

Books for children

• What does Dead Mean by Jenni Thomas
• Lifetimes: The Beautiful Way to Explain Death to Children by Bryan Mellonie
• When Dinosaurs Die by Marc Brown
• Someone I loved Died by Christine Harder Tangvald
• I Miss You-A first look at death by Pat Thomas
• What happens when Someone Dies by Michaeline Mundy
• I’ll always love you by Hans Wilhelm
• Are you Sad Little Bear? By Rachel Rivett
• FamilyEducation.com

Local Grief and Bereavement Resources

Not all are ASD-specific but some may provide accommodations to meet family’s needs

Seattle

Seattle Children’s Journey Program (Grief and Loss)
The Journey Program is for any family who has experienced the death of a child. It provides support to help families cope with death, loss and the grieving process through support groups, sibling workshops and counseling, meetings with family members, follow-up phone contact with the family and suggestions for reading materials and referrals to community resource. Additionally the program offers grief support to schools and communities and bereavement education and training for the community.

Everett, Lewis-Clark Valley, Seattle, Tacoma, Wenatchee

Camp Erin is a bereavement camp for children and teens, ages 6-17, who have experienced the death of someone close to them.